Pregnancy and PBC

[njc67]

Hi, I am 36 and recently diagnosed. Waiting for scan but bloods currently showing normal liver function. My Dr isn't very informative and has already indicated he's not particularly family friendly so I don't know who to ask. I have been looking for information on pregnancy and PBC. I am wondering...... is it a no-go, is it irresponsible, if I don't have any symptoms, would it be ok to consider another pregnancy? Thank you in anticipation.

[Debbiem40]

I've had PBC for 13 years, just after the birth of my son. The hospital knew I was trying for another (which sadly never happened) but all they did was not put me on Urso until we had finished trying. Unless things have changed in that time I think you will be fine. x

[cazer]

I have a personal ex of this but its not a short answer so will have to reply later or tomorrow as i have to go out.best wishes cazer.xx

[Aga1981]

Hi, I'm 35 and I have a 2,5 yo son. I've had PBC for 4 years (at least I was diagnosed then). The pregnancy was absolutely normal, my liver did great During the pregnancy all my liver tests were normal, after delivery ALP was slightly increased. My son in healthy and I've been thinking about trying again. This time I have the same doubts you do - about being irresponsible etc. but I still think it is worth trying. x

[Loopyblue]

Hi njc67 . I ve had pbc for 11 yr s now. Got pregnant at 41 now 51. I have a gorgeous 9 yr boy who seems to be very healthy(everything crossed). I had to take urso through out my pregnancy and was closely monitored seemingly with no side effects. I would take advice from your consultant however I was never told not to have any more children and it is your choice.Hope this helps. 😊

[kgohn]

I answered a similar question in detail to another member of this forum last year. I've had 2 children and have most likely had PBC a while now. Both are healthy and the oregnsncued normal. I'd be happy to email you more detail and a journal article from a medical journal about a study on PBC and pregnancy. I'm a librarian...do always looking at medical journals. You can message me your email if you like.

[GrittyReads]

On what grounds were you diagnosed if your lfts are okay? There need to be 2 positive 'diagnostic criteria' for a formal/official diagnosis of PBC, and if you have AMAs, that alone is not enough for a positive diagnosis (I've had just AMAs for 24 years, no PBC and annual lfts still perfect). I'm assuming you have not had a biopsy (the 3rd 'diagnostic criterion' according to UK/US regulations).

Are you in the UK? If so, ask at your GP practice to see one of the other GPs, and insist on a full explanation of the diagnosis. I would contact the 'PBC Foundation' first and get yourself really clued up on PBC - a lot of GPs know very little about it. Also, read around on their site, and on here. You can also ask at your practice for a printout of all test results and letters - there may be a small charge for copying, more if they are older (check the cost) but my practice are okay with it and I always get copies.

If you have been diagnosed with PBC you need to see a Consultant, preferably a Hepatologist, rather than a general gastroenterologist, and preferably a PBC Specialist. I can't say much about the pregnancy issue, esp in relation to Urso, but I know people on here who have had children while having PBC.

Hope this helps, take care.

[cazer]

I was really poorly with my 4thbaby and he was delivrred 5 weels early but didnt survive.i was never able to work after that unfortunately but obvoously this wasmy fourth pregnancy.cont on next email.cazer

[cazer in reply to cazer]

I so so sorry yhay should say nearly didnt survive

[cazer in reply to cazer]

He is now 17 and fine.l suppose the bottom line is that its how long is a piece of string.i was told that pregnancy hormones can affect pbc and perhaps because it was my forth pregnancy and o had glandilar fever at the same time.i am now borderline txp asessment which im fine with as i would love the chance todo more again.

I think you shouldget loads of info from all sources ask yo speak to a hepatogist and an immunologist as its a conditoon that o think can be passed down to females...but dont quote me on that.

Have a huge honest chat with your partner as it could meam he has to do more.

I think if id had all the facts thingsmight have played out differently..but i really dont know.

We called our 35 wk baby dominic which means a gift from god he is a lovely lad.its been hard on all 4 of them but hopefully they are better people for it.

They have the biggest hurdle left when o have a transplant .i wishyou all the very best and sometimes its easiest not to know.i did not get a diagnosis until he was 3mths old so i didnt have to decide.best wishes cazer.xxx

[Photodreamer76]

Excerpt from PBC Foundation:

There is not a great deal of published experience about pregnancy in people with PBC.

I suspect this is for a number of reasons: firstly, women are diagnosed with PBC often at a stage in their life when they do not wish to become pregnant and secondly, there is not a great deal that is very original which can be said. Most of the published literature in this area was written in the 1970s and 1980s, when our understanding of PBC was very different and people were usually diagnosed often at a late stage. In people with chronic liver disease of any cause, fertility is often reduced and, therefore, the chances of becoming pregnant are less.

In considering pregnancy in people with liver disease, there are many factors which have to be borne in mind.

LIVING WITH PBC

32

© PBC FOundATIOn (uK) LTd. 2010

Before Pregnancy

People with PBC often have lower fertility than the average woman. This is found in people with liver disease of any cause and relates to how the liver handles the sex hormones. Menstruation may be irregular and there is a high incidence of hysterectomy in people with PBC which often precedes the diagnosis, sometimes by several years.

If you are considering becoming pregnant, then it is important to prepare yourself as far as possibly for

pregnancy. Many family practitioners run Well Woman Clinics and if there is one available locally, I suggest you would be well advised to attend this. not only would you have a full check-up, but you would be able to consider correcting any vitamin deficiencies which might be present. Some people with PBC may not absorb all their vitamins properly, particularly fat soluble vitamins such as A, D, E and K. Those who are taking Questran may also have lower absorption of vitamins.

Before you become pregnant (but not immediately before!) you should take time to discuss with your specialist the implications of becoming pregnant. It may be a good idea to have an endoscopy to see if you have varices before you become pregnant. There are many factors which may affect a successful pregnancy and it would be sensible for you to be aware of any risk to yourself and to the baby.

It is often helpful to arrange an appointment with the specialist outside outpatient clinics when there is less pressure on time and you and your partner can ask all the questions which you would like answered. It is also helpful for you to prepare a list, in advance,

because of the stress and anxiety of coming to hospital may make you forget all the points you wish to have raised. You should also consider any medication you are taking. This will include not only those prescribed by doctors, but others you may buy from a pharmacy, also herbal remedies and vitamins. All such medications must be considered potentially toxic to the baby and it is always a good concept that the minimum of medicines should be taken.

Many people with PBC are taking medication and there are natural concerns about whether to carry on taking these drugs and the effect they may have on the foetus. Any drug has the potential to interact with the foetus and at all stages of the pregnancy, the foetus may be at risk. You always have to weigh up the risks and benefits of

medication and the effects on the foetus. Again, you should discuss these options with your specialist.

The Effects of Pregnancy on the Mother

There is little doubt that any pregnancy is associated with a small risk to the mother. For the mother with established cirrhosis, those risks are greater. In particular, the effects of the growing foetus in the abdomen may affect the liver and the pressures in the tummy. Certainly, in the final stages of pregnancy and during delivery, pushing should be avoided as the extra strain associated with pushing will cause the pressure in any varices present to increase and that may result in bleeding. This can be catastrophic and, therefore, should be avoided by obstetric manoeuvres that reduce, or obviate, the need for pushing.

There are some women in whom PBC is first diagnosed during pregnancy. Often the liver tests become abnormal and itching may be more pronounced. There is increasing experience with ursodeoxycholic Acid for pruritis caused by the pregnancy (in the absence of PBC) and, therefore, no reason known not to use it for this purpose in later pregnancy, if required. The effect of pregnancy in women with established PBC is variable. It is difficult to predict but, in general, those with early PBC do withstand

pregnancy very well and without problems. There is no evidence that there is any increased risk to the foetus if the mother has PBC.

33

© PBC FOundATIOn (uK) LTd. 2010

LIVInG WITH PBC

Long Term Contraindications

Of course, you need to consider whether you will be able to go through the pregnancy because of your liver disease, but you will also need to consider how well you will be able to bring up your children. With the advent and success of

liver transplantation, it is very rare for women with PBC to have such significant problems that they will not live to see their children grow up. However, there is a small number of people for whom

liver transplantation may be unavailable, unacceptable, or unsuccessful and you and your partner will need to take these considerations in mind. Assuming all goes well and once the baby is born, there should be no major problems. If you are taking any medication, you should always check with the obstetrician, or your doctor, that breast-feeding is safe and that drugs will not be passed through the breast milk. Although there is a slightly increased risk that family members will have PBC, there is no other reason why you should not breast feed, or treat your baby in exactly the same way as anybody else.

Overall, therefore, the experience of

pregnancy in people with PBC is variable. In those with advanced liver disease, pregnancy may best be avoided at least until after liver transplantation. In those with early disease, there is rarely any problem. As always, with any medical condition, you should think ahead early, get as much information as you want and then make your own decision and work with the support of doctors